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Communicating with the Family of the Child with a Developmental Disability
ARTICLES
Communicating with the family of the child with a developmental disability Derek H. W illard, P hD Arthur J. N ow ak, D M D
As more fam ilies seek dental care for their disabled child from private practitioners, increased demands will be placed on the dentist and dental staff; m any complications can be managed effectively i f they consider parental attitudes toward the child’s handicap and the dental situation.
T
J L h ere are an estim ated 33 m illio n p eo p le in th e U n ited States w ith dev elo p m en tally d isa b lin g co n d itio n s.1 D ental care is p e rh a p s th e ir greatest u nm et health n ee d .2 The term d ev e lo p m e n ta lly disab led as u se d here refers to a b road range of h an d icap s from m e n tal re ta rd a tio n to p h y sic al h a n d ic a p s. Broadly, th e term refers to in d iv id u a ls w ho, for w h ate v er reason, have d ifficulty in achieving expected fu n c tio n a l a b ility c o rre sp o n d in g to th eir ch ron o lo g ical age.3 H istorically, d en tal care for d ev elo p m en tally d is ab led ch ild re n h as been n eg lec ted .4 D ental n eed s of the disab led cu rren tly exceed fin an cial resources an d d en tists tra in e d to deal w ith th e m .1,5,6 A recen t n a tio n a l rep o rt in d ic ates that b etw e en 10% an d 25% of th e n a tio n ’s 115,000 p racticin g d en tists are w illing to trea t certain k in d s of d isab led p a tien ts, yet are often u n ab le to do so be cau se of th e serio u sn ess of the h a n d i
ca p p in g co n d itio n , arc h itec tu ral bar riers in th e office, or o th er rea so n s.1 F am ily finances, energy, tim e, an d co n c en tra tio n are severely ch allen g ed by th e expenses an d effort in v o lv ed in re h a b ilita tio n . As a resu lt, d en tal care is fre q u en tly in te rm itte n t or om itted from th e c h ild ’s to tal h e a lth care p ro g ram .7 C h ild ren of fam ilies of m in o rity g roups or w ith lim ite d in co m e face co m p o u n d e d p ro b lem s.8 B ecause of th ese problem s, th e d e n tal p rofession is c u rren tly resp o n d in g to im prove th e accessib ility an d q u al ity of care for th e d isab led c h ild .9,10 M ore inform atio n is b eing p ro v id ed for stu d e n ts an d g en eral p rac titio n e rs an d m ore em p h asis is b eing p laced on hom e care. It is h o p e d th a t su c h em p h a s i s w i l l r e d u c e e m e r g e n c ie s , m in im iz e th e n ee d for rem ed ial d en tal treatm en t, an d co n trib u te to th e c h ild ’s p h y s ic a l a n d p s y c h o lo g ic a l w e ll being.
As m ore fam ilies seek care for th e ir h a n d ic a p p e d ch ild a n d m ore e m p h a sis is p la ce d on p a tie n t a n d fam ily e d u catio n , in c re ase d d em an d s w ill be p la ce d on th e d e n tist an d d e n ta l staff to c o m m u n i c a t e e f f e c t i v e l y a n d h u m a n ely , n o t ju st w ith th e ch ild , b u t w ith th e fam ily as w ell. P aren tal a ttitu d e s are m o re cru cial to th e success of d e n ta l tre a tm e n t for th e h a n d ic a p p e d c h ild th a n for o th e r c h il d ren . L en g th y h o s p ita liz a tio n , c o n valescen ce, or o th e r d ifficu lties in re m oving the ch ild from th e h o m e re qu ire a greater em p h asis o n p rev e n tio n an d h o m e h e a lth care a n d h e n c e a g reater in v o lv em en t of fam ily m e m bers. M any severe c o m p lic atio n s for th e p atien ts, staff, an d fam ily ca n be elim in a te d if th e d e n tist a n d d en tal staff tak e in to a c c o u n t p a re n ta l a t titu d e s to w ard th e c h ild ’s h a n d ic a p an d th e d en tal situ atio n .
There are an estim ated 33 million people in the United States with developm entally disabling conditions. Dental care is perhaps their greatest unmet health need. JADA, Vol. 102, M ay 1981 ■ 647
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Parental thoughts and feelings
Adjustment to the handicap Parents of handicapped children have all the usual concerns about their ch il dren and their dental care, plus one: the adjustm ent to the handicap itself. A ttitudes toward the disability w ill enter into any issu e relating to the ch ild ’s dental care; by the same token, the dentist’s approach to the child and fam ily w ill in fluence their reactions and their accep tan ce of treatment. Reactions to disabling illness are per sonalized and depend on age, experi ence, in telligen ce, reflected em otional reactions o f supporting people, and certain intangibles.11,12 Dentists and other h elp in g professionals, therefore, can never predict or prejudge the na ture of the parental reactions. Each case m ust be considered as a separate and distinct situation. However, some com m on patterns of reactions have been noted.1115 GRIEF. A com m on feeling relating to the child. Grief is a normal response to loss: parents of handicapped children may grieve openly or covertly for the loss of the ch ild they m ight have had. The grieving process often lasts w ell beyond the tim e w h en fam ilies are in formed of the ch ild ’s illness. Because o f the chronic nature o f m any disabili ties, there are periods of rem issions or im p ro v em en t, fo llo w e d by further com plications or deterioration. Over t im e , f e e l i n g s a c c u m u la t e , an d changes in situations can bring griev ing em otions to the surface again. The d en tist and d en tal staff sh ou ld be aware of the grieving process w hen consulting w ith parents. This process can affect the am ount of information parents can absorb at a given point and what kinds o f d ecision s they are pre pared to make.
the face of overw helm ing evidence; a com pulsion to be left alone. Here par ents fear the im plications of the dis ability to the extent that they cannot let it enter their m inds. They m ay con sciously or u nconsciously m islead the dentist and staff. A denying parent may be con sp icu ously absent for con sultations or decision-m aking sessions regarding the ch ild ’s care. R ealistic reassurance is important in this case, but even more important is a kind but firm clarification o f the necessary pro cedures and treatment. D enial may dim inish as a m eans for controlling anxiety if parents perceive the dentist as a confident and helping person. DEPRESSION. A sense of loss; reduc tio n o f s e lf - e s t e e m ; a p a th y ; psychom otor retardation; loss of appe tite; feelin gs of isolation; inability to com m unicate. Tim e and h elp from other other health care professionals may be necessary before treatment is com plete, but the dentist may help by keeping the lines of com m unication open, thus reducing som e of the feel ings o f isolation. He or she m ay also consider referral. Just as w ith denial, d ep ression m ay be associated w ith broken appointm ents or seem ing lack of interest in treatment.
SHOCK OR NUMBNESS. A temporary absence of feeling: a slow ing down; som e confusion; a search for direction. Here it m ay be important sim ply to af firm the w illin gn ess to provide profes sional care and to present things sim p ly and in easy stages.
FRUSTRATION AND ANGER. Parents of handicapped children may be strug gling w ith situations that others in cluding the helping professional, can never know . Fear, depression, anxiety, and gu ilt m ay thwart normal parental striving for physical and psychologi cal w ell-being, self-esteem , and selfactualization. Irritability and anger are normal outcomes. F eelings of hostility and a shifting of guilt may emerge as com plaining or increased dem ands on the dentist and staff. A normal reaction to h ostility is to withdraw or to meet criticism w ith criticism . It m ay be helpful to recognize and respond to the feelings them selves. This m ay pro vid e comfort and an opportunity for the fam ily to work through their feel ings, after w hich the dentist may be able to outline a course of treatment w ith in realistic lim itation s. A gain, help from other professionals may be necessary.
DENIAL. A n attempt to avoid the prob lem or m inim ize its im plications; fail ure to acknow ledge facts; disbelief in
GUILT. A feeling o f responsibility or self-blam e, not on ly for the handicap but also for the frustrations and feel
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in gs surrounding it. Such feelings may block realistic progress toward treat m ent or rehabilitation. Again, listen in g, realistic reassurance, and a clarifi cation of the issues involved in the c h ild ’s treatment may be necessary. ACCEPTANCE. A ck n o w le d g in g and learning to deal w ith their thoughts and feelings regarding the handicap; m aking adjustments in fam ily life to accom m odate. Parents may be more know ledgeable and realistic about the ch ild and h is or her care than the den tal staff. They may be using the full po tential of a health care team and m aybe able to introduce n ew and helpful in formation to the dental staff.
Dynamics T hese feelings do not develop in any chronological sense; they may recur or disappear, or dim inish and then be com e more severe. Som e may not ap p ear at a ll. Y et certa in e v e n ts or benchmarks are often associated w ith periods of increased stress. Increased intensity of feelings is expected at the follow in g stages15,16: — T he p red ia g n o stic p erio d . A s sociated w ith suspicion, fear, doubt, blame, and gu ilt that accom pany liv ing w ith the unknown. — The diagnostic period. A ssociated w ith the hurt, anxiety, and m ourning for a lost “w h o len ess” that follow s the im pact of learning the facts. — The preschool years. Many of the c h ild ’s d is a b ilitie s are se en m ore noticeably and he or she begins to fall behind peers. — The elem entary school years. The ch ild m ust leave the fam ily for a w orld that lacks understanding or a ccep tance. — A dolescence. The burden of a fu ture that is lim ited m ust be faced. —A dulthood. The final stage, w hen both the handicapped person and the fam ily m ust com e to terms w ith the fu ture. Because these stages or periods do not progress in a straightforward man ner, the parent w ho seem ed to be cop ing so w ell six m onths or a year ago m ay be under som e n ew pressure or an accum ulation of pressures that brings on a n ew w ave of frustration, anger, or grief. This parent w ill seem to be a dif ferent person and may react to the den tal setting in a different manner.
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Attitudes toward dental care For several reasons, dental care m ay be a neglected aspect of the handicapped ch ild ’s total health program.14 Finan cial resources may be lim ited; know l edge of the im portance of good dental care may be lacking; health care plan ners w ho advised the parents initially m ay have om itted dental care in their consultations; parents m ay have been frustrated in their attempts to find a dentist w ho w ould accept the ch ild as a patient. Even if these are not prob lem s, parents may have been so ab sorbed in m edical, social, or fam ily problems in raising the child that they have not sou ght dental care or in cluded it in the ch ild ’s rehabilitation program. At the initial visit, therefore, parents m ay bring w ith them m ixed feelin gs of anxiety, frustration, and guilt relating to their ch ild ’s dental care.14 Likewise, they m ay be ambiva lent about h ow m uch can really be ac com plished through dental services.
Opportunities for dentist and staff W ith the background of the child and parents, the initial visit is of crucial importance. This is an early opportu nity for the dentist to establish a rela tionship w ith the parents and child, to identify their attitudes and assess their readiness for treatment. The first visit is generally an important opportunity for dentist and staff to com m unicate their interest and ability to provide care for the child. Other opportunities should be created or capitalized on. —Regular dental care should begin as early as possible. W hen possible, c o n su lta tio n w ith p aren ts sh o u ld begin along w ith the diagnosis of the h a n d ic a p it s e lf. S o m e c lin ic ia n s suggest that, w ith infants, it should begin not later than betw een the ninth and 12th m onth of life.14 Dental treat m ent sh ou ld be integrated into the ch ild ’s total health care program, al low in g opportunities to treat and con sult on a continuing basis. This pro vid es an opportunity for com prehen sive care and ensures that the lin es of com m unication betw een dentist and parents rem ain open. — The d en tist sh ou ld be fam iliar w ith th e c h ild ’s h isto ry and thor oughly understand the handicapping conditions. The dentist should receive the history before treatment and make
prelim inary assessm ents of the c h ild ’s potential for cooperation, indications and contraindications for conscious sedation, and the need for other pre cautions.14 M anagement of and rap port w ith the child m ay then develop in r e la t io n to t h e m e d ic a l a n d paramedical background. F urth er c o n s u lta tio n s w ith th e ch ild ’s physician or other allied health professionals may provide important clu es to the acceptance and success of treatment in other situations and em o tional factors affecting treatment out com es.7 Such consultation is impor tant, particularly in cases in w hich parents may only partially understand or accept the reality of the condition and its im plications. —Enough tim e should be available for the initial dental visit. Because of the special nature of the patient, the dentist m ust provide h im self or herself and the fam ily w ith enough tim e to es tablish a relationship and elicit infor mation necessary for successful care on a continuing basis. Though it is w ise to schedule enough tim e during the initial visit, M athew son and Bea ver17 have reported that treating the handicapped patient during a series of visits does not take significantly more tim e per v is it than other p a tien ts scheduled during a series. Time, there fore, should not be a strong deterrent to acceptance of the h and icap ped pa tient. — Thoughts and feelin g s m ust be identified. The dentist, w ithin lim its, m ust carefully identify, interpret, and deal w ith various parental thoughts and feelings that w ill affect the nature and s u c c e ss o f treatm ent. Parents should be given an opportunity to de scribe previous treatment, their expec tations for the future, and their reac tions to these exp eriences. Though m any parents appreciate the opportu nity to express them selves, som e may be reticent. They m ay be talking things out w ith friends or other professionals or m ay be surprised at the dentist’s in terest. In such cases, the u se of openended questions or probing follow -up questions m ay be necessary to obtain needed information. S ile n c e , to o , ca n c o m m u n ic a te m uch about the parents’ thoughts and feelings. They may be depressed or have reached a point at w h ich they want to withdraw and regroup em o tionally. In all instances, the practitio ner m ust identify and evaluate these
reactions as they affect the approach and treatment. —The dentist m ust em pathize w ith the parents. The dental interview may elicit all the feelings of anxiety, frus tration, anger, or guilt m entioned ear lier. Further, parents may seem to be too protective or dem anding. In m any instances, it is important for the den tist to respond by allow ing the parents to vent these feelings freely. Empathy should not im ply that the dentist w ill finally agree w ith the thoughts or feel in gs or accede to parental dem ands, but rather that h e or she accepts the legitim acy and im portance of these thoughts and feelings, given the expe rience of the family. The dentist may then redirect the fam ily toward realis tic treatment goals. —Parents m ust be reassured realis tically. A com m on problem in any therapeutic situation is the tem ptation to offer a solution prematurely or unrealistically. N ot all the problem s can be solved satisfactorily, and the dentist should not raise false hopes either by o ffe r in g a q u ic k s o l u t i o n or by m inim izing the im plications of a prob lem . Still, som e degree of confidence, self-esteem , or merit may be restored s im p ly by lis te n in g and sh o w in g genuine interest. Care should be taken not to be too critical of past dental om issions; em phasis should be placed, instead, on the d entist’s confidence that a realistic program can be d esig n ed and im plem ented to restore or m aintain an adequate level of oral health. This is also the tim e for the dentist and staff to underscore their confidence and inter est in dealing w ith the patient and fam ily. A nxiety may be lessen ed som e w hat by a m od ified “tell-sh o w -d o ” format fam iliarizing the parents with the treatment room and an explanation o f the screening procedure. Parents sh o u ld k n o w b y th e en d that th e screening procedure usually does not present m uch stress but that they w ill be informed or asked to assist if com plications arise.14 Further, it should be com m unicated to the parent that the dentist and staff recognize this ch ild as a person and w ill make an effort to deal w ith h is or h er sp e c ia l requ irem en ts. A w e lltrained dental assistant w ith a positive attitude can be invaluable: by form ing a close relationship w ith the ch ild and, hence, w ith the parents, it can be made clear that this ch ild has yet another
W illard -N o w a k : COMMUNICATING WITH FAMILY OF CHILD WITH DISABILITY ■ 649
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ally ready to observe and attend to his n eed s.3 — T he c h ild ’s n eed s m ust be as sessed . The screening exam ination, t o g e t h e r w it h t h e m e d ic a l a n d param edical background and the in i tial and later interview s w ith parents and child, w ill enable the dentist to as sess the ch ild ’s dental needs. A n as sessm ent should also be made of the remarks and actions of the parents and child, w h ich indicate the level of com prehension, maturity, problem areas, and ability and w illin gn ess to accept treatment. This assessm ent w ill pro v id e a basis for treatment approach and planning. It may also disclose sp e cial problems that m ight arise during 0 1 after treatm ent. This assessm en t m ay in v o lv e inform ation from the ch ild ’s physician or allied health pro fessionals. — R ea listic g o a ls and o b jectiv es should be set. The im portance of hom e health care for the handicapped has b e e n e m p h a s iz e d r e p e a t e d ly .3,4,7 N othing is m ore frustrating and disap pointing for parents than a superficial plan for treatment or prevention that does not take into account the fam ily situation and the ch ild ’s condition. R ealistic goals should be set for ap pointm ents w ith the patient. V isits can provide an opportunity for instruction and dem onstration of hom e care procedures, as w ell as diag n osis, restoration, and prophylaxis. Such instruction should be based on the dentist’s assessm ent of the child and fam ily— on their ability and w ill ingness to absorb and use this informa tion. The dentist may also consult w ith or recom m end follow -up care, not only through h is or her office but through various resources in the com m unity. These w ou ld include the public health n u r s e , p h y s ic a l or o c c u p a t io n a l therapist, and m any other people w ho may be working w ith the fam ily al ready. — The practitioner should recognize lim itations. Just as m any physicians lack the aptitude, interest, training, or ability to deal w ith the problems of the handicapped,18 so too, m any dentists may d ecide that the special problems
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o f su ch p atien ts are b ey o n d their capabilities. As training and informa tion about the handicapped patient in creases, more and more work m ay be accom plished in the office of the gen eral dentist. Yet there may still be oc casions w hen the dentist w ill want to refer the child and the fam ily to one better eq u ip p ed to m eet particular needs. T radition ally, p ed o d o n tists have cared for handicapped children. In the past, these were the only professionals w ith enough training and experience to deal w ith these problem s,14 and the p r o f e s s io n c a n s t i l l lo o k to th e p ed od on tist for h elp w ith d ifficu lt cases. The fam ily may present more em otional problems or dem ands than the dentist has the time, training, or inclination to deal with; a patient may be referred or th e’dentist may consult directly w ith another member of the health care team. Some dentists prefer to m inim ize contact w ith the parents of disabled patients or to m anage d is abled patients in hospital settings w ith use of general anesthesia. In m any in stances, consultation w ith the parents and ch ild m ay reduce or elim inate elaborate proceedings that m ay be un necessary or life-threatening.
Summary A s more and more fam ilies of handi capped children seek dental care, in creased demands w ill be placed on the dentist and staff to com m unicate effec tively and hum anely, not only w ith the ch ild but w ith the parents. Increased training is currently being provided through doctoral programs and con tinuing education to deal w ith the spe cial hum an needs of the patient and fam ily in a dental setting.19 The dentist sh ould address the thoughts and feel ings of the parents as w ell as those of the child. The child and fam ily present special problems but also special op portunities to fulfill professional re sponsibilities and experience personal and professional gratification.
Dr. W illard is assistant professor and director, behavioral sciences, departm ent of preventive
an d com m unity dentistry, College of Dentistry, U niversity of Iowa, Iowa City, 52242; and Dr. N owak is professor, pedodontics, College o f Den tistry, University of Iowa, and director, dep art m ent of dentistry, the U niversity of Iowa Hospital School. Address requests for reprints to Dr. W il lard. 1. Robert Wood Johnson Special Report. Den tal care for handicapped Americans: a national problem , special report no. 2. P rinceton, NJ, Robert Wood Johnson Foundation, 1979, p p 3-4. 2. Nowak, A.J. D entistiy for the handicapped. St. Louis, C. V. Mosby Co., 1976. 3. Healy, A. Developmental disability—a new term for old conditions. J Dent H andicap 3(l):5-9, 1977. 4. Rosenstein, S.N. Dental care for the h a n d i capped. In Downey, J.A., and Low, N.L. (eds.). T he child w ith disabling illness. Philadelphia, W. B. Saunders Co., 1974. 5. B ureau of econom ic an d behavioral re search. D istribution of dentists in th e U nited S tates by state, region, d istric t an d co u n ty . Chicago, American Dental Association, 1979. 6. B ureau of econom ic an d behavioral re search. Facts about states for dentists seeking a lo cation. Chicago, Am erican D ental Association, 1979. 7. Eisenberg, L.S. The care and treatm ent of handicapped children. J C hild Dent 43(4):240244,1976. 8. H enry, J.L., and Sinkford, J.L. Com m unity dental care for developm entally disabled ch il dren. An overview of the problem . J Am Coll Dent 39(3):184-187,1972. 9. Dental help for the handicapped: cam paign of concern. JADA 92(3):555-558,1976. 10. Young, W.O., and Shannon, J.H. Providing dental treatm ent for handicapped children. J Dent Child 35(3):225-240,1968. 11. Kanner, L. Childhood psychiatry (ed 3). Springfield, 111, Charles C Thomas, 1970. 12. Debuskey, M. (ed.). T he chronically ill child and his family. Springfield, 111, Charles C Thomas, 1970. 13. S ch w artz, L.H., a n d S w artz, J.L. T he psychodynam ics of patient care. Englewood, NJ, Prentice-Hall, Inc., 1972. 14. Poland, C., and Davis, W.B. Dental prob lem s of the handicapped child. In McDonald, R.E., and Avery, D. (eds.). D entistry for the child and adolescent (ed 2). St. Louis, C. V. Mosby Co., 1978, pp 488-503. 15. Shotland, L. Social w ork approach to the chronically handicapped and their fam ilies. So cial Work 9(4):68-75,1964. 16. Goldon, E. Parental reactions to the b irth of a sick infant. Child Today 8(4):13-16,1979. 17. Mathewson, R.I., and Beaver, H.A. A sur vey of dental care for handicapped children. J Public H ealth Dent 30(l):45-52,1970. 18. N elson, W.E., an d others. T extbook of pediatrics (ed 9). P hiladelphia, W. B. Saunders Co., 1979. 19. W illard, D.; Logan, H.; and Sim pson, R. Com municating w ith the handicapped patient: experience of dental students at the U niversity of Iowa. J Dent Handicap 3(2):5-8,1978.
Communicating with the family of the child with a developmental disability Derek H. W illard, P hD Arthur J. N ow ak, D M D
As more fam ilies seek dental care for their disabled child from private practitioners, increased demands will be placed on the dentist and dental staff; m any complications can be managed effectively i f they consider parental attitudes toward the child’s handicap and the dental situation.
T
J L h ere are an estim ated 33 m illio n p eo p le in th e U n ited States w ith dev elo p m en tally d isa b lin g co n d itio n s.1 D ental care is p e rh a p s th e ir greatest u nm et health n ee d .2 The term d ev e lo p m e n ta lly disab led as u se d here refers to a b road range of h an d icap s from m e n tal re ta rd a tio n to p h y sic al h a n d ic a p s. Broadly, th e term refers to in d iv id u a ls w ho, for w h ate v er reason, have d ifficulty in achieving expected fu n c tio n a l a b ility c o rre sp o n d in g to th eir ch ron o lo g ical age.3 H istorically, d en tal care for d ev elo p m en tally d is ab led ch ild re n h as been n eg lec ted .4 D ental n eed s of the disab led cu rren tly exceed fin an cial resources an d d en tists tra in e d to deal w ith th e m .1,5,6 A recen t n a tio n a l rep o rt in d ic ates that b etw e en 10% an d 25% of th e n a tio n ’s 115,000 p racticin g d en tists are w illing to trea t certain k in d s of d isab led p a tien ts, yet are often u n ab le to do so be cau se of th e serio u sn ess of the h a n d i
ca p p in g co n d itio n , arc h itec tu ral bar riers in th e office, or o th er rea so n s.1 F am ily finances, energy, tim e, an d co n c en tra tio n are severely ch allen g ed by th e expenses an d effort in v o lv ed in re h a b ilita tio n . As a resu lt, d en tal care is fre q u en tly in te rm itte n t or om itted from th e c h ild ’s to tal h e a lth care p ro g ram .7 C h ild ren of fam ilies of m in o rity g roups or w ith lim ite d in co m e face co m p o u n d e d p ro b lem s.8 B ecause of th ese problem s, th e d e n tal p rofession is c u rren tly resp o n d in g to im prove th e accessib ility an d q u al ity of care for th e d isab led c h ild .9,10 M ore inform atio n is b eing p ro v id ed for stu d e n ts an d g en eral p rac titio n e rs an d m ore em p h asis is b eing p laced on hom e care. It is h o p e d th a t su c h em p h a s i s w i l l r e d u c e e m e r g e n c ie s , m in im iz e th e n ee d for rem ed ial d en tal treatm en t, an d co n trib u te to th e c h ild ’s p h y s ic a l a n d p s y c h o lo g ic a l w e ll being.
As m ore fam ilies seek care for th e ir h a n d ic a p p e d ch ild a n d m ore e m p h a sis is p la ce d on p a tie n t a n d fam ily e d u catio n , in c re ase d d em an d s w ill be p la ce d on th e d e n tist an d d e n ta l staff to c o m m u n i c a t e e f f e c t i v e l y a n d h u m a n ely , n o t ju st w ith th e ch ild , b u t w ith th e fam ily as w ell. P aren tal a ttitu d e s are m o re cru cial to th e success of d e n ta l tre a tm e n t for th e h a n d ic a p p e d c h ild th a n for o th e r c h il d ren . L en g th y h o s p ita liz a tio n , c o n valescen ce, or o th e r d ifficu lties in re m oving the ch ild from th e h o m e re qu ire a greater em p h asis o n p rev e n tio n an d h o m e h e a lth care a n d h e n c e a g reater in v o lv em en t of fam ily m e m bers. M any severe c o m p lic atio n s for th e p atien ts, staff, an d fam ily ca n be elim in a te d if th e d e n tist a n d d en tal staff tak e in to a c c o u n t p a re n ta l a t titu d e s to w ard th e c h ild ’s h a n d ic a p an d th e d en tal situ atio n .
There are an estim ated 33 million people in the United States with developm entally disabling conditions. Dental care is perhaps their greatest unmet health need. JADA, Vol. 102, M ay 1981 ■ 647
A RTICLES
Parental thoughts and feelings
Adjustment to the handicap Parents of handicapped children have all the usual concerns about their ch il dren and their dental care, plus one: the adjustm ent to the handicap itself. A ttitudes toward the disability w ill enter into any issu e relating to the ch ild ’s dental care; by the same token, the dentist’s approach to the child and fam ily w ill in fluence their reactions and their accep tan ce of treatment. Reactions to disabling illness are per sonalized and depend on age, experi ence, in telligen ce, reflected em otional reactions o f supporting people, and certain intangibles.11,12 Dentists and other h elp in g professionals, therefore, can never predict or prejudge the na ture of the parental reactions. Each case m ust be considered as a separate and distinct situation. However, some com m on patterns of reactions have been noted.1115 GRIEF. A com m on feeling relating to the child. Grief is a normal response to loss: parents of handicapped children may grieve openly or covertly for the loss of the ch ild they m ight have had. The grieving process often lasts w ell beyond the tim e w h en fam ilies are in formed of the ch ild ’s illness. Because o f the chronic nature o f m any disabili ties, there are periods of rem issions or im p ro v em en t, fo llo w e d by further com plications or deterioration. Over t im e , f e e l i n g s a c c u m u la t e , an d changes in situations can bring griev ing em otions to the surface again. The d en tist and d en tal staff sh ou ld be aware of the grieving process w hen consulting w ith parents. This process can affect the am ount of information parents can absorb at a given point and what kinds o f d ecision s they are pre pared to make.
the face of overw helm ing evidence; a com pulsion to be left alone. Here par ents fear the im plications of the dis ability to the extent that they cannot let it enter their m inds. They m ay con sciously or u nconsciously m islead the dentist and staff. A denying parent may be con sp icu ously absent for con sultations or decision-m aking sessions regarding the ch ild ’s care. R ealistic reassurance is important in this case, but even more important is a kind but firm clarification o f the necessary pro cedures and treatment. D enial may dim inish as a m eans for controlling anxiety if parents perceive the dentist as a confident and helping person. DEPRESSION. A sense of loss; reduc tio n o f s e lf - e s t e e m ; a p a th y ; psychom otor retardation; loss of appe tite; feelin gs of isolation; inability to com m unicate. Tim e and h elp from other other health care professionals may be necessary before treatment is com plete, but the dentist may help by keeping the lines of com m unication open, thus reducing som e of the feel ings o f isolation. He or she m ay also consider referral. Just as w ith denial, d ep ression m ay be associated w ith broken appointm ents or seem ing lack of interest in treatment.
SHOCK OR NUMBNESS. A temporary absence of feeling: a slow ing down; som e confusion; a search for direction. Here it m ay be important sim ply to af firm the w illin gn ess to provide profes sional care and to present things sim p ly and in easy stages.
FRUSTRATION AND ANGER. Parents of handicapped children may be strug gling w ith situations that others in cluding the helping professional, can never know . Fear, depression, anxiety, and gu ilt m ay thwart normal parental striving for physical and psychologi cal w ell-being, self-esteem , and selfactualization. Irritability and anger are normal outcomes. F eelings of hostility and a shifting of guilt may emerge as com plaining or increased dem ands on the dentist and staff. A normal reaction to h ostility is to withdraw or to meet criticism w ith criticism . It m ay be helpful to recognize and respond to the feelings them selves. This m ay pro vid e comfort and an opportunity for the fam ily to work through their feel ings, after w hich the dentist may be able to outline a course of treatment w ith in realistic lim itation s. A gain, help from other professionals may be necessary.
DENIAL. A n attempt to avoid the prob lem or m inim ize its im plications; fail ure to acknow ledge facts; disbelief in
GUILT. A feeling o f responsibility or self-blam e, not on ly for the handicap but also for the frustrations and feel
648 ■ JADA, Vol. 102, May 1981
in gs surrounding it. Such feelings may block realistic progress toward treat m ent or rehabilitation. Again, listen in g, realistic reassurance, and a clarifi cation of the issues involved in the c h ild ’s treatment may be necessary. ACCEPTANCE. A ck n o w le d g in g and learning to deal w ith their thoughts and feelings regarding the handicap; m aking adjustments in fam ily life to accom m odate. Parents may be more know ledgeable and realistic about the ch ild and h is or her care than the den tal staff. They may be using the full po tential of a health care team and m aybe able to introduce n ew and helpful in formation to the dental staff.
Dynamics T hese feelings do not develop in any chronological sense; they may recur or disappear, or dim inish and then be com e more severe. Som e may not ap p ear at a ll. Y et certa in e v e n ts or benchmarks are often associated w ith periods of increased stress. Increased intensity of feelings is expected at the follow in g stages15,16: — T he p red ia g n o stic p erio d . A s sociated w ith suspicion, fear, doubt, blame, and gu ilt that accom pany liv ing w ith the unknown. — The diagnostic period. A ssociated w ith the hurt, anxiety, and m ourning for a lost “w h o len ess” that follow s the im pact of learning the facts. — The preschool years. Many of the c h ild ’s d is a b ilitie s are se en m ore noticeably and he or she begins to fall behind peers. — The elem entary school years. The ch ild m ust leave the fam ily for a w orld that lacks understanding or a ccep tance. — A dolescence. The burden of a fu ture that is lim ited m ust be faced. —A dulthood. The final stage, w hen both the handicapped person and the fam ily m ust com e to terms w ith the fu ture. Because these stages or periods do not progress in a straightforward man ner, the parent w ho seem ed to be cop ing so w ell six m onths or a year ago m ay be under som e n ew pressure or an accum ulation of pressures that brings on a n ew w ave of frustration, anger, or grief. This parent w ill seem to be a dif ferent person and may react to the den tal setting in a different manner.
ARTICLES
Attitudes toward dental care For several reasons, dental care m ay be a neglected aspect of the handicapped ch ild ’s total health program.14 Finan cial resources may be lim ited; know l edge of the im portance of good dental care may be lacking; health care plan ners w ho advised the parents initially m ay have om itted dental care in their consultations; parents m ay have been frustrated in their attempts to find a dentist w ho w ould accept the ch ild as a patient. Even if these are not prob lem s, parents may have been so ab sorbed in m edical, social, or fam ily problems in raising the child that they have not sou ght dental care or in cluded it in the ch ild ’s rehabilitation program. At the initial visit, therefore, parents m ay bring w ith them m ixed feelin gs of anxiety, frustration, and guilt relating to their ch ild ’s dental care.14 Likewise, they m ay be ambiva lent about h ow m uch can really be ac com plished through dental services.
Opportunities for dentist and staff W ith the background of the child and parents, the initial visit is of crucial importance. This is an early opportu nity for the dentist to establish a rela tionship w ith the parents and child, to identify their attitudes and assess their readiness for treatment. The first visit is generally an important opportunity for dentist and staff to com m unicate their interest and ability to provide care for the child. Other opportunities should be created or capitalized on. —Regular dental care should begin as early as possible. W hen possible, c o n su lta tio n w ith p aren ts sh o u ld begin along w ith the diagnosis of the h a n d ic a p it s e lf. S o m e c lin ic ia n s suggest that, w ith infants, it should begin not later than betw een the ninth and 12th m onth of life.14 Dental treat m ent sh ou ld be integrated into the ch ild ’s total health care program, al low in g opportunities to treat and con sult on a continuing basis. This pro vid es an opportunity for com prehen sive care and ensures that the lin es of com m unication betw een dentist and parents rem ain open. — The d en tist sh ou ld be fam iliar w ith th e c h ild ’s h isto ry and thor oughly understand the handicapping conditions. The dentist should receive the history before treatment and make
prelim inary assessm ents of the c h ild ’s potential for cooperation, indications and contraindications for conscious sedation, and the need for other pre cautions.14 M anagement of and rap port w ith the child m ay then develop in r e la t io n to t h e m e d ic a l a n d paramedical background. F urth er c o n s u lta tio n s w ith th e ch ild ’s physician or other allied health professionals may provide important clu es to the acceptance and success of treatment in other situations and em o tional factors affecting treatment out com es.7 Such consultation is impor tant, particularly in cases in w hich parents may only partially understand or accept the reality of the condition and its im plications. —Enough tim e should be available for the initial dental visit. Because of the special nature of the patient, the dentist m ust provide h im self or herself and the fam ily w ith enough tim e to es tablish a relationship and elicit infor mation necessary for successful care on a continuing basis. Though it is w ise to schedule enough tim e during the initial visit, M athew son and Bea ver17 have reported that treating the handicapped patient during a series of visits does not take significantly more tim e per v is it than other p a tien ts scheduled during a series. Time, there fore, should not be a strong deterrent to acceptance of the h and icap ped pa tient. — Thoughts and feelin g s m ust be identified. The dentist, w ithin lim its, m ust carefully identify, interpret, and deal w ith various parental thoughts and feelings that w ill affect the nature and s u c c e ss o f treatm ent. Parents should be given an opportunity to de scribe previous treatment, their expec tations for the future, and their reac tions to these exp eriences. Though m any parents appreciate the opportu nity to express them selves, som e may be reticent. They m ay be talking things out w ith friends or other professionals or m ay be surprised at the dentist’s in terest. In such cases, the u se of openended questions or probing follow -up questions m ay be necessary to obtain needed information. S ile n c e , to o , ca n c o m m u n ic a te m uch about the parents’ thoughts and feelings. They may be depressed or have reached a point at w h ich they want to withdraw and regroup em o tionally. In all instances, the practitio ner m ust identify and evaluate these
reactions as they affect the approach and treatment. —The dentist m ust em pathize w ith the parents. The dental interview may elicit all the feelings of anxiety, frus tration, anger, or guilt m entioned ear lier. Further, parents may seem to be too protective or dem anding. In m any instances, it is important for the den tist to respond by allow ing the parents to vent these feelings freely. Empathy should not im ply that the dentist w ill finally agree w ith the thoughts or feel in gs or accede to parental dem ands, but rather that h e or she accepts the legitim acy and im portance of these thoughts and feelings, given the expe rience of the family. The dentist may then redirect the fam ily toward realis tic treatment goals. —Parents m ust be reassured realis tically. A com m on problem in any therapeutic situation is the tem ptation to offer a solution prematurely or unrealistically. N ot all the problem s can be solved satisfactorily, and the dentist should not raise false hopes either by o ffe r in g a q u ic k s o l u t i o n or by m inim izing the im plications of a prob lem . Still, som e degree of confidence, self-esteem , or merit may be restored s im p ly by lis te n in g and sh o w in g genuine interest. Care should be taken not to be too critical of past dental om issions; em phasis should be placed, instead, on the d entist’s confidence that a realistic program can be d esig n ed and im plem ented to restore or m aintain an adequate level of oral health. This is also the tim e for the dentist and staff to underscore their confidence and inter est in dealing w ith the patient and fam ily. A nxiety may be lessen ed som e w hat by a m od ified “tell-sh o w -d o ” format fam iliarizing the parents with the treatment room and an explanation o f the screening procedure. Parents sh o u ld k n o w b y th e en d that th e screening procedure usually does not present m uch stress but that they w ill be informed or asked to assist if com plications arise.14 Further, it should be com m unicated to the parent that the dentist and staff recognize this ch ild as a person and w ill make an effort to deal w ith h is or h er sp e c ia l requ irem en ts. A w e lltrained dental assistant w ith a positive attitude can be invaluable: by form ing a close relationship w ith the ch ild and, hence, w ith the parents, it can be made clear that this ch ild has yet another
W illard -N o w a k : COMMUNICATING WITH FAMILY OF CHILD WITH DISABILITY ■ 649
ARTICLES
ally ready to observe and attend to his n eed s.3 — T he c h ild ’s n eed s m ust be as sessed . The screening exam ination, t o g e t h e r w it h t h e m e d ic a l a n d param edical background and the in i tial and later interview s w ith parents and child, w ill enable the dentist to as sess the ch ild ’s dental needs. A n as sessm ent should also be made of the remarks and actions of the parents and child, w h ich indicate the level of com prehension, maturity, problem areas, and ability and w illin gn ess to accept treatment. This assessm ent w ill pro v id e a basis for treatment approach and planning. It may also disclose sp e cial problems that m ight arise during 0 1 after treatm ent. This assessm en t m ay in v o lv e inform ation from the ch ild ’s physician or allied health pro fessionals. — R ea listic g o a ls and o b jectiv es should be set. The im portance of hom e health care for the handicapped has b e e n e m p h a s iz e d r e p e a t e d ly .3,4,7 N othing is m ore frustrating and disap pointing for parents than a superficial plan for treatment or prevention that does not take into account the fam ily situation and the ch ild ’s condition. R ealistic goals should be set for ap pointm ents w ith the patient. V isits can provide an opportunity for instruction and dem onstration of hom e care procedures, as w ell as diag n osis, restoration, and prophylaxis. Such instruction should be based on the dentist’s assessm ent of the child and fam ily— on their ability and w ill ingness to absorb and use this informa tion. The dentist may also consult w ith or recom m end follow -up care, not only through h is or her office but through various resources in the com m unity. These w ou ld include the public health n u r s e , p h y s ic a l or o c c u p a t io n a l therapist, and m any other people w ho may be working w ith the fam ily al ready. — The practitioner should recognize lim itations. Just as m any physicians lack the aptitude, interest, training, or ability to deal w ith the problems of the handicapped,18 so too, m any dentists may d ecide that the special problems
650 ■ JADA, Vol. 102, May 1981
o f su ch p atien ts are b ey o n d their capabilities. As training and informa tion about the handicapped patient in creases, more and more work m ay be accom plished in the office of the gen eral dentist. Yet there may still be oc casions w hen the dentist w ill want to refer the child and the fam ily to one better eq u ip p ed to m eet particular needs. T radition ally, p ed o d o n tists have cared for handicapped children. In the past, these were the only professionals w ith enough training and experience to deal w ith these problem s,14 and the p r o f e s s io n c a n s t i l l lo o k to th e p ed od on tist for h elp w ith d ifficu lt cases. The fam ily may present more em otional problems or dem ands than the dentist has the time, training, or inclination to deal with; a patient may be referred or th e’dentist may consult directly w ith another member of the health care team. Some dentists prefer to m inim ize contact w ith the parents of disabled patients or to m anage d is abled patients in hospital settings w ith use of general anesthesia. In m any in stances, consultation w ith the parents and ch ild m ay reduce or elim inate elaborate proceedings that m ay be un necessary or life-threatening.
Summary A s more and more fam ilies of handi capped children seek dental care, in creased demands w ill be placed on the dentist and staff to com m unicate effec tively and hum anely, not only w ith the ch ild but w ith the parents. Increased training is currently being provided through doctoral programs and con tinuing education to deal w ith the spe cial hum an needs of the patient and fam ily in a dental setting.19 The dentist sh ould address the thoughts and feel ings of the parents as w ell as those of the child. The child and fam ily present special problems but also special op portunities to fulfill professional re sponsibilities and experience personal and professional gratification.
Dr. W illard is assistant professor and director, behavioral sciences, departm ent of preventive
an d com m unity dentistry, College of Dentistry, U niversity of Iowa, Iowa City, 52242; and Dr. N owak is professor, pedodontics, College o f Den tistry, University of Iowa, and director, dep art m ent of dentistry, the U niversity of Iowa Hospital School. Address requests for reprints to Dr. W il lard. 1. Robert Wood Johnson Special Report. Den tal care for handicapped Americans: a national problem , special report no. 2. P rinceton, NJ, Robert Wood Johnson Foundation, 1979, p p 3-4. 2. Nowak, A.J. D entistiy for the handicapped. St. Louis, C. V. Mosby Co., 1976. 3. Healy, A. Developmental disability—a new term for old conditions. J Dent H andicap 3(l):5-9, 1977. 4. Rosenstein, S.N. Dental care for the h a n d i capped. In Downey, J.A., and Low, N.L. (eds.). T he child w ith disabling illness. Philadelphia, W. B. Saunders Co., 1974. 5. B ureau of econom ic an d behavioral re search. D istribution of dentists in th e U nited S tates by state, region, d istric t an d co u n ty . Chicago, American Dental Association, 1979. 6. B ureau of econom ic an d behavioral re search. Facts about states for dentists seeking a lo cation. Chicago, Am erican D ental Association, 1979. 7. Eisenberg, L.S. The care and treatm ent of handicapped children. J C hild Dent 43(4):240244,1976. 8. H enry, J.L., and Sinkford, J.L. Com m unity dental care for developm entally disabled ch il dren. An overview of the problem . J Am Coll Dent 39(3):184-187,1972. 9. Dental help for the handicapped: cam paign of concern. JADA 92(3):555-558,1976. 10. Young, W.O., and Shannon, J.H. Providing dental treatm ent for handicapped children. J Dent Child 35(3):225-240,1968. 11. Kanner, L. Childhood psychiatry (ed 3). Springfield, 111, Charles C Thomas, 1970. 12. Debuskey, M. (ed.). T he chronically ill child and his family. Springfield, 111, Charles C Thomas, 1970. 13. S ch w artz, L.H., a n d S w artz, J.L. T he psychodynam ics of patient care. Englewood, NJ, Prentice-Hall, Inc., 1972. 14. Poland, C., and Davis, W.B. Dental prob lem s of the handicapped child. In McDonald, R.E., and Avery, D. (eds.). D entistry for the child and adolescent (ed 2). St. Louis, C. V. Mosby Co., 1978, pp 488-503. 15. Shotland, L. Social w ork approach to the chronically handicapped and their fam ilies. So cial Work 9(4):68-75,1964. 16. Goldon, E. Parental reactions to the b irth of a sick infant. Child Today 8(4):13-16,1979. 17. Mathewson, R.I., and Beaver, H.A. A sur vey of dental care for handicapped children. J Public H ealth Dent 30(l):45-52,1970. 18. N elson, W.E., an d others. T extbook of pediatrics (ed 9). P hiladelphia, W. B. Saunders Co., 1979. 19. W illard, D.; Logan, H.; and Sim pson, R. Com municating w ith the handicapped patient: experience of dental students at the U niversity of Iowa. J Dent Handicap 3(2):5-8,1978.